is not enough to all patients with this rare disease will find help in the system maybe some of the normal experts will know the disease but we have as are diseases in the range of twenty patients known worldwide to them so called an orphan disease so often disease is a disease when we don't even have the name for the disease but the red disease is a disease where we have a name and all those rare diseases have something in common next to that they're quite rare yeah indeed so calm. and problems into common topics are for us the diagnosis is always very late in this patients because no one knows the disease no one thinks about the disease and. years in the system the way to find diagnosis the second problem is not enough experts so if you mention different diseases you don't have to experts for all of a silent but every patient with the disease at least in the high developed health